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The Body in Parts: Disease and the biomedical sciences in the 20th century

In the 20th century, Western societies have experienced a significant and humbling transformation in the character and understanding of disease with the rise of chronic disease, the decline of acute disease, and the evolving understanding of the mechanisms of "diseases of civilization" - from many cancers to cardiovascular disease and AIDS. This essay provides an overview of this transformation in disease, and explains how the history and philosophy of science can illuminate this 20th century transition. Moreover, the essay provides an argument for how a study of the biomedical sciences in America can demonstrate the ways in which science, medicine, and culture have interacted to address these evolving problems of disease in our time. Such a project would focus on four areas of the biomedical sciences: immunology, oncology, genetics, and anesthesiology.

Part one of the essay provides an overview of the relationship of biomedical science, clinical knowledge, and disease It considers the recent history of cystic fibrosis (CF), as a case in point of the transition of specific diseases. The contemporary clinical scientific, and public discussion of CF emphasizes the genetic and hereditary components of this disease, and stresses therefore that it is a "genetic disease." Accordingly, it is argued that "gene therapy" on the lung epithelial cells offers the possibility of a "cure." Yet, the history of CF offers another more complex image of a disease - that is, as a multi-systemic disease whose primary features have been characterized differently at various times, by various clinical sciences.

In the 1930s, CF was characterized as a "rare" nutritional disease treatable perhaps by vitamin supplements and careful diet. In the 1940s and 1950s, it was characterized as "cystic fibrosis of the pancreas" implying that the major problem was organic in nature. In the 1950s, the disease was increasingly defined as a pulmonary disease, focusing clinical and scientific attention on the significant pulmonary manifestations of the disease. At the same time, it was also studied as a "metabolic disease" and a "hereditary disease" clinical scientists continued awareness of its Multi-dimensional character, as well as the role of inheritance in its origins family in its management. At the same time, the increasing production use of antibiotics in CF patients made the pulmonary features of the disease more treatable but increased the life expectancy of CF sufferers and thus the chronic character of the disease. Only in the last two decades, has the definition of CF as a "genetic disease" emerged into full scientific and public prominence, and "gene therapy" to date has focused (not on pancreatic or gastrointestinal features of the disease but) only on the pulmonary manifestations. The essay explains why these changing biological characterizations of CF have occurred, how they shed light on the transformation of disease, and what these changes reflect about changing clinical science research agendas, therapeutic practices, and popular understandings of this disease.

Part two of the essay then describes four components of a research program that would extend such an analysis into other diseases (lung cancer, breast cancer, leukemia, prostate cancer, diphtheria, polio, AIDS, acute and chronic pain, sickle cell anemia, and others) and the related clinical research fields. Such a project will produce numerous discrete studies, and a major synthetic work on The Pursuit of Clinical Science in 20th Century America. The essay therefore includes a synthetic outline of the major topics of this book, and an explanation of the audience for such a study.

A third part of the essay also explains how this extensive, eight-year project will be organized around archival research, graduate courses, scholarly workshops, public symposia. The essay describes how each component of the study will employ qualified graduate research assistants to help carry out the gathering of information, and its analysis. Each component will also be organized around a graduate level course in the specific field. These courses will draw together students and faculty from diverse fields who are interested in the phenomenology of disease and the biomedical sciences under consideration. There will also be several workshops associated with these courses, each bringing together leading researchers in On history and philosophy of the biomedical sciences to the UNC campus for intensive discussion of research in progress. Four symposia (every other year) will push these scholars to present work to the university, scholars from other universities, and the wider public, and thereby to disseminate the products of the research more broadly. The essay concludes by describing the dissemination of this research, and how I will draw upon my experience as an historian, former science journalist, and professor of medical students, undergraduates, and graduate students to contribute to public and professional understanding of the transformation of disease in the 20th century and the role of the biomedical sciences in that transformation.

Every component of the project asks one central question focusing on the changing phenomena of disease (or rather a group of diseases in these four fields). It asks: What has been the relationship between 1) the lived experience of disease, 2) the changing clinical symptoms and approaches to these diseases, and 3) the evolving scientific perception of the biological mechanisms of these diseases? Answering this question lies at the heart of my attempt to define the biomedical sciences in our time.